Sep 15

The Pain Of Loneliness


Does anyone ever feel lonely?

Does anyone ever feel confusion?

Does anyone ever have memory loss?

Does anyone else feel so raw inside, they feel there will never ever heal again?

Does anyone ever feel that they are on their own, and there’s just no one there to help them?

I live with my partner, and two young children. We don’t have a big family, and we don’t have any friends near. 

For me life is very lonely, I only really meet people by chance, and only for short chats. When I take or collect the kids from school, but it is awkward as I have to use a mobility scooter and people seem to stay away because of it. Because they don’t know what disorder I have, and no one cares to ask. 

I went to hospital last week, to see my spinal Neurosurgeon. There whilst waiting I met such a nice couple, two middle aged men, one was ill the other his Carer and partner. The Carer spoke to me starting the conversation, by using my mobility scooter to talk about getting about. 

His partner has rapid deteriorating MS, we were talking about memory loss which I have a lot now usually short term. The guy I was speaking with said here, listen. He then asked his partner who was the prime minister? He thought then answered David Cameron. When asked what year was it, he took longer to think then said 2015. Both times he was very positive with his answer. Sadly he is behind by two years, my Functional Movement Disorder has overlapping symptoms of other movement disorders, and it does frighten me that one day I may need full time care like this lovely man. He is very lucky to have such a caring and loving partner. It doesn’t phase him because he loves him.  This man was lonely too, he has a full time job caring for his partner which gives no time for him to do anything else.

The feeling of loneliness and not talking to people, leaves you feeling hollow.

Then again whilst waiting a woman spoke to me. She said “oh I could have done with one of those to get here, we went here there and everywhere to find the place”. That was the total conversation, and only about my mobility scooter which I find annoying. My mobility scooter isn’t to make my life easy, it is my legs when I got out, same as my wheelchair is! I just smiled at her, saying yes it’s a large place. She then turned back to her friend. If anything, this short chat then turning away, makes me feel more on my own, more lonely because I was on my own.

It doesn’t matter what I do, I always feel lonely. Whether I try to lose myself in painting, my uni work, or just try to watch a film. There always seems something that makes the loneliness come back.

I am so lonely 😟

Thanks as always for reading, and take care of you x

Aug 18

Do you have neck pain? Could it possibly be Lymes Disease? 


Picture credit to Dreamstime.com 

There are a great many symptoms shared by both Functional Movement Disorder and Lymes Disease which can easily be overlooked.
In this research, it tells of how it can effect the spine along with other areas.

Many aspects of Lyme disease are still not fully understood, including how exactly it causes neck pain and stiffness. However, it is thought that the primary bacteria of Lyme disease in the United States, Borrelia burgdorferi, can get into tendons, ligaments, muscles, intervertebral discs, blood vessels, and/or the linings of nerves—including in the neck—causing inflammation, pain, and muscle spasms.A great site, and a must read if you are unsure about your disorder. 

Quote from – https://www.spine-health.com/conditions/neck-pain/neck-pain-lyme-disease?source=3tab&utm_medium=web&utm_source=sites&utm_campaign=3tab


Above picture credit to Google. This shows the actual sizes of the tick which can give us Lymes Disease. Amazing a thing so small, can do so much damage.

Once bitten by a tick (mostly these ticks are found in certain areas of America, but are now found her in the UK. Mostly I believe in Scotland, as there are many deer live there. Though they can be passed on from deer, but also dogs and other animals. Once bitten itcan take a few days, but you will see like a bulls eye shape appear on the skin in red, as this moves outwards from the bite. Not everyone notices the mark, especially if it is on their back. Below is a picture of how these bulls eye rash marks look on the skin.

Picture credit to Google
If you see a Bulls Eye Rash appear like any of these, you really do need to be seen by a Doctor immediately, to try and stop the problems you can get from Lymes.

I believe that the more information we learn about our disorder/s, then the better informed we can be when Drs ask us questions. As sadly Functional Movement Disorder really is not very well known about in the medical community, and definitely not in the whole world really. 
The more we can learn and pass along, the better! 😊👍
So here is the link to a great spinal site, about possible neck pain from Lymes Disease!
https://www.spine-health.com/conditions/neck-pain/neck-pain-lyme-disease?source=3tab&utm_medium=web&utm_source=sites&utm_campaign=3tab

It may help one person, or hopefully many 👍

Thanks as always for reading folks 😊

May 08

Moving Your Twisted Body Through Dance

There are many of us who go through each day, struggling with the jiggling movements of our necks. The twisting contorted movements, or the quick swinging round of the head from the neck muscles spasming and moving wrong due to the Movement Disorder called Dystonia  . These neck movements of Dystonia are actually named ‘Cervical Dystonia‘. Dystonia can also effect many other parts of the body as well, with Cervical Dystonia making the natural freedom of movement restricted, and can make your body even walk wrong with problems as the neck is part of the mane column that holds the body up.
There are other neck movements called Spasmodic Torticollis, again a symptom of Dystonia. Spasmodic Torticollis, also known as a crick in the neck, wry neck or loxia, is a dystonic condition defined by an abnormal, asymmetrical head or neck position, which may be due to a variety of causes. The term torticollis is derived from the Latin words tortus for twisted and collum for neck. The most common case has no obvious cause, and the pain and difficulty with turning the head usually goes away after a few days, even without treatment.

 

I suffer from this Cervical Dystonia myself, and I am lucky enough to get Botox injections for my neck. Along with injections for my eye spasms called Blepharospasm, and injections in my cheek as my face also spasms which is called Hemifacial Spasm.
I found a video on YouTube which I think would be very valuable to others who have these conditions, and to give hope that you can help yourself, either on your own or alongside the other treatments you have.
https://youtu.be/DwkHK3rfKO0

 

In this YouTube video, you will see how Federico Bitti, rewired his brain through movement and dance and Neuroplasticity Movement Therapy.
I’m sure we can all find five minutes a day, just for ourselves to have one little dance to a song on the radio, or pop your favourite pop song on, or classical tune to sway to, then step it up little by little.
I have back problems, but I can dance with my arms and the truck of my body, and of course my neck. So there is no excuse to not give it a go, so go on give it go. What have we got to lose? Nothing. We can only gain from movement, and rewiring our own brains go for it!

 

Unfortunately as most of us know, people can also get Functional Dystonia. So any one who has the Functional Dystonia, come and join in too. We are all in this together, let’s makes ourselves better if we can, we have nothing to lose 😊
Thanks for reading folks, enjoy your days

Mar 29

Hi it has been a while!

 Picture from Bing Images

I’ve not written for such a long time, I just have not been well enough to put the small amount of energy I had, into blogging. I have needed to give everything to myself, give me time to try to heal a little.

If we never stop and look at ourselves from the perspective as if we were looking at a mirror image, then we never actually see how ill we have become. I was ill, very ill. I was so busy looking after people in my group, or Facebook, or twitter. Answering other people’s questions, and forgetting to ask my own when at my appointments, that I forgot to look after me.

Then Christmas was upon us, I had to get all the presents sorted and wrapped and arrange for visiting, to where, with who, and when. All too much!!! It all became too much.

I imploded on myself, and got even worse. Following a very reserved Christmas, I got a bad chest infection. I couldn’t seem to shake it off, then my partner got it and we were both so run down it was hard work. The kids ended up looking after us, asking if we needed drinks or anything they could do for us. Bless them, they never let things get them down. I went to the doctors and got antibiotics for my chest, which eventually helped a little.

Though whilst having the chest infection, and holding my chest from soreness and coughing, I felt a lump. I did not know what to do, so I waited and checked it every day until I made an appointment and went back to the doctors. She checked me, and she found another lump with a mass. I was so scared. As it was sore and hot to the touch, the doctor thought it may be an infection, Mastitis. I took the antibiotics I was prescribed, they were a high dosage to work fast. I went back the following week, and she checked me again. We both agreed that we thought the lumps had gone down slightly, but she was not happy to leave it, and referred me to the breast clinic. It was a scary wait, it was nearly a week before they rang me with an appointment to go in the following week. This meant it was five weeks since I had found it, but I was okay I knew I could feel it was still going down. The check up would just be a precaution, and it was okay I could deal with that.

The clinic was quiet, I was with my partner as were some other women. I felt for the ones who were alone, but not everyone wants to tell what they are going through. The nurses were caring, the doctor who checked me was careful not to push on the breast too hard. The Mammogram pressed, that was painful but you just bite your lip and get on with it. We went off to wait for the results to be done, we went and had lunch and then got a call to go back for the results. I knew it was going to be okay, but my heart was beating so fast! We went into the doctor’s office, sat down, and it was all clear. just mastitis which had gone away with the antibiotics. Though now I am to go for a scan every three years, and check myself regularly. Something we forget to do when there are so many other things that seem to get in the way of thinking about yourself.

People think, that because I don’t write about everything anymore, that I must be okay. That because I can answer their questions and help them, that I come over as being strong, therefore I am okay. I am not okay, I haven’t been for so long now it is just the norm for me to be ill. Yet I am disabled, I am in pain constantly, I take so many medications to help to live day-to-day, sometimes just to get through the days. That because I get on with things, with life, that I am okay. Yet you only have to ask my partner, who knows that at the weekend it is so hard to drag myself out of bed. That I have little to no energy for anything anymore.

But I am still here, tired and worn down, but I am still here. I just have to keep my energy for myself more, though I still care very much about everyone else out there. That suffers the same or similar as I do, that keeps getting up every day and fights to have a life.

We are still here, and still fighting one day at a time.

You can follow my facebook ‘Functional Movement Disorder’ page here: https://www.facebook.com/movementdisorda/

Thanks as always for reading 🙂

 

Oct 01

Working Together With The Patient

It is great to read an article, where they talk about “working together with the patient”. 

Patients do have a voice, and they do Google their problems. So even if they may have picked up and stayed with the wrong medical diagnosis, it is better to be able to talk it through with the doctor and why they think this. Then go from there, and try to look at the symptoms the patients has, on a symptom by symptom view. 

Giving a person one diagnosis name to cover everything (even if it is right), the patients need to know that their doctors recognise that the disorder, does have individual symptoms and therefore problems. Then look at the individual problems, on their own basis.

This gives the patient a feeling of security, that they are being looked after and “treated” for all their problems. 
This article below shows the big step forward, of Doctor and patient collaboration. 
Working to the same goal, of making the patient live an easier and hopefully pain free life.
http://www.thedoctorblog.com/collaborating-with-patients/

Collaborating with Patients in the Digital Information Age

February 19, 2014 By Tali Shenfield, PhD

Let’s hope this is the way forward, a future of doctors working with their patients. Not just telling the patient they have some disorder, but helping them work to understand their individual symptoms.

With the medical profession constantly advancing, I think we will be in safe hands. Psychologists have a big part to play in some patients recoveries. They work with your doctors who do the diagnosing, then the psychologist helps by letting you talk. 

Tell the Psychologist what problems you have, if you know, tell how they started. If not just talk, and along the way with the Psychologists help, you will hopefully get to an understanding of what your body is doing and why. 

Talking therapy has been looked down on in the UK, for many years. We always thought it was other countries that used them, that needed them. How wrong we are, you see, by talking you get out all your upset, your feelings. They tumble out, sometimes uncontrollably, and in there you will find you have lots you want to say but never knew. 

Talking therapy gives the release that so many people need, even if it is only that one session that is needed. That one session could be what turns your life on an axis, to the new point you want to start from.

Going to see the Psychologist, they talk to you, understand you, and work with you. They can help you get where you need to be, want to be, back to who you used to be. 

Or maybe even better!

 A you that has moved on, and wants for more!

A you that aims for more, and  becomes more!

A you that is happier, and has more understanding!

A you that even if there is still some debilitating situation, you can deal with it!

Stay happy folks, and thanks for reading 😊 X 

Jun 28

Insufficient Good Bacteria In The Gut A Reason For MS?


http://www.nationalmssociety.org/Research/Research-We-Fund/Stop-MS-In-Its-Tracks

I think we may all have heard, that the gut (Human gastrointestinal tract) can definitely have an affect on people in many different ways.

This research link below however, says they believe it could be the reason for some people getting Multiple Sclerosis. I have not heard of this before, so it is of great interest. That an insufficient amount of good bacteria, could have a direct link to MS!

Multiple sclerosis (MS) is a condition of the central nervous system.

In MS, the coating around nerve fibres (called myelin) is damaged, causing a range of symptoms. 

More than 100,000 people in the UK have MS. Symptoms usually start in your 20s and 30s and it affects almost three times as many women as men.

What is MS? – https://www.mssociety.org.uk/what-is-ms/information-about-ms/about-ms

As you know I suffer from Dystonia, Functional Movement Disorder, PTSD, NEAD, Chronic Fatigue Syndrome, Sleep Disorder, Chronic Pain Syndrome, and Functional Bowel Disease. It is also thought that I now have Fibromyalgia, and it is possible Hemiplegic Headaches. On top of which I have other problems, such as brain fog and loss of memory. I also suffer a lot of back problems, and am myself disabled. I know it’s quite a list, but at least my diagnosis’ are separated, and not just put under my Functional Disorder diagnosis. Which means that they get looked at separately, and I get the correct medication needed for each one.

As Functional Movement Disorder has many overlapping symptoms, from many other Movement Disorders. This sort of informational research, is of interest as it may point to reasons behind our questions for our disorders.

Finding answers to our questions can mean so much, as we are left without answers from both Doctors and Consultants so many times.

It is the reason I find myself looking for answers for my questions, sometimes it is the only way to make sense of why these disorders choose certain types of people. There are also thoughts that low immune systems have a lot of connections to the gut, again another answer ticked off!

It seems the body’s gut has a lot to answer for! 

http://neurosciencenews.com/gut-bacteria-multiple-sclerosis-4574/

Thanks as always for reading, and take care of yourself and your loved ones 😊 X.

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